I Decided to Decide

I still feel weird writing these. It seems so ego-driven or self-centered to think that others would want to know about my situation, but I guess "it's the thing to do." At least lots of people in my boat do it to keep friends and family posted on progress. For those who do want to read it, I thank you.

I had another monthly blood test a few days ago and it showed my white blood cell count had risen again, this time from 69,000 to 77,000. That compares to 32,000 in May, 68,000 in June, and 69,000 in July. "Normal" would be less than 10.

Even if the blood test had shown an increase of only another 1,000, as it had last time, I knew it was time to take action. The sleep-upright idea had run its course. It wasn't working any more. The lymph nodes are continuing to swell. The green tea extract has undoubtedly slowed the growth of white blood cells somewhat, but not enough. I can see it in the mirror. I hardly recognize myself when I look in the mirror. Some days I can even feel my eye lids and eye sockets closing in around my eyes.

I remembered some advice given by an ROTC instructor at URI in 1966. I was taking as wide range of courses as possible, avoiding the notion of a "major" completely. I was trying to keep as many doors open as possible. Major John Leach said to me: "You have to decide to decide." He was right; I knew it. And I know it now.

So I decided to decide. I have decided to start chemotherapy. Swine flu on the horizon or not.

Probably it will start about October first.

I have three basic choices: Rituxan (a monoclonal antibody) alone; "FCR"--which is a cocktail comprised of Fludarabine, Cyclophosphamide, and Rituxan; and "FCR Lite", which is the same as FCR, but given at a different strength and over a longer period of time to reduce the strain on the kidneys caused by all the medicine-killed white blood cells running through it.

FCR is the strongest and most stressful on the body, but statistically is shown to produce the longest and deepest remission most often. Also, the first treatment administered in one's lifetime is the most important one.

So, I have decided to hit it hardest and try to do it most thoroughly: FCR.

The schedule is three consecutive days of treatment every month for six months . . . if you can stand it.

So, that's the news from Lake Wobegon (d.b.a. Duane Lake).

Update after more than a year

It's been more than a year since I posted anything here. Maybe I've been too lazy to do it. Maybe I've felt as though I have nothing much to say or to add, Mostly, it just seems a bit vain to think anybody actually would want to read this stuff.

But, anyway, there have been some developments.

In late April 2009 Nancy and I went to a conference at Niagara Falls, Ontario. It was a gathering of CLL patients and doctors and researchers who specialize in CLL. The agenda looked too good to miss.

As one might guess, the interaction with other patients---an amazingly well informed group of people in this case---was at least as educational as the lectures presented by the doctors and researchers.

Certainly the biggest piece of information I brought home was from a chance conversation I had with a fellow patient who had flown up from Santa Fe, New Mexico. He said that a researcher from Mayo Clinic had told him to try taking a concentrated extract of green tea. The researcher was involved with a team that was doing clinical trials of green tea.

Supposedly the green tea extract had shown promise by reducing the swelling of lymph nodes and lowering the white blood cell count.

So, starting May first I began taking a half gram of green tea extract in the morning and another half gram in the evening.

My monthly blood test in June didn't show any positive effect. My white blood cell count was continuing to double just about every thirty days . . . not good.

Around the first of July I obtained a pre-publication copy of the research journal article about this. I learned there that the people who took the highest daily doses---two grams in the morning and two at night---showed the most positive effects. In short, I needed to quadruple my dose. So I did.

My blood test in the middle of August surprised my oncologist. It showed almost zero increase in my white blood cell count over my July test. You have to think it was the increased dosage of green tea extract that was the cause.

But---how come there always has to be a "but"?---as late August rolled into September, some other observations weren't looking so promising.

My "make do" sleeping technique of sleeping in an upright position (so as not to gag from horizontal throat tissues collapsing and blocking my throat) was beginning to seem inadequate. I found I was gagging at night even in a perfectly upright position. That is definitely not good! Plus I could see new lymph nodes beginng to bulge here and there on my neck. My face often itches all-over at about 3:00 a.m.

Plus, I know I am a lot more tired than I was in April. Lack of sleep will do that, as will the weird stuff going on in my blood.

So, here I am, thinking maybe it is time---after all---to begin some sort of chemotherapy.

But.

Another but.

Here comes swine flu. People whose judgment I really trust are showing good evidence that swine flu will be rampant in October and November, decline some, and then come back again a bit in the spring.

One of the realities of CLL is an impaired immune system that makes me extra vulnerable to pneumonia. Chemotherapy seriously adds to the immune system damage. So maybe chemotherapy is not such a good idea right now.

What am I going to do?

I don't know.

I do know I am going to be working from home for the rest of September and all of October, as a sort of self-imposed quarantine. I want to reduce the number of chances that I will come in contact with somebody else's swine flu.

I keep thinking maybe I can string together four or five good nights of sleep and feel a bit rejuvenated. But the more days and weeks that go by without that happening, the more I think maybe I'll have to do the chemo thing, swine flu or not.

We shall see.